For the better half of
my early twenties, I was Bubble Girl. When I was diagnosed with
leukemia at 22 my world suddenly dwindled to four white walls, a
hospital bed, fluorescent lights and a thicket of tubes and wires
connecting me to an IV pole. My immune system had been annihilated by
chemotherapy. Sex, a common cold, fresh-cut flowers, a handshake, a
paper cut — these were all things that could kill me if I wasn’t
careful. Unable to have a job, go to parties, travel or achieve any of
the rest of the big and small milestones of early adulthood, I started
asking myself important questions, like, “What in the world did I want
to do with my life? What could I do with my life from a hospital bed?”
Being sick and young
is hard in all the ways you might imagine and more, but mostly it can be
incredibly boring. “You need a project,” people kept telling me during
my first few weeks in the hospital. “Something to keep you from going
stir crazy.” Hospital volunteers offered a variety of one-on-one
“how-to” classes to break up the day involving things like knitting,
beading, making vision boards and dream catchers. But none of those
activities felt very me. I was sick — not retired.
That’s around the time
my friends and family suggested we start something called “The 100 Day
Project.” I can’t remember who came up with it first, but the idea was
that each of us would do something creative once a day, every day, for
one hundred days.
My mother decided to
paint a watercolor each morning by my hospital bed. My father, who
rarely speaks about growing up in a family of seven children in rural
Tunisia, wrote down one hundred childhood memories that he compiled into
a book for me.
My boyfriend sent me
daily iPhone video reports from the outside world on everything from the
weather to the quality of the pizza in the hospital cafeteria. “I’m
reporting from Central Park,” he’d say. “Today I’d like to introduce you
to the hot dog vendor across the street from the hospital. Rafiki, say
what up to Suleika!”
For my 100 Day
Project, I chose writing. I promised myself that, no matter how sick or
exhausted I felt, I would jot something down in my journal every single
day. Some days that meant pouring my heart out onto a dozen pages, other
days I wrote one word — generally beginning with the letter ‘F.’
The 100 Day project
was meant to be a diversion from the steady hum of monitors, the chatter
of medical students in the hallway, the wheezing of respirators, the
alarm that went off whenever my condition abruptly worsened. With time,
though, it became much more than that. It was a way of organizing my
days around one small, simple act of happiness. It helped me to
reconnect to myself when the person staring back at me in the mirror had
become unrecognizable. Keeping that journal showed me how to write my
way out of my private hell. It gave me a voice when I felt I had none
and a job to do beyond simply trying to survive. To set a 100-day plan
was to will myself into the future, no matter how uncertain it seemed.
A year after my
diagnosis, the 100 days took on an added significance as I prepared to
undergo a harrowing bone marrow transplant with my brother Adam as my
donor. The transplant was dangerous — my doctors explained to me that I
only had a 35 percent chance of long-term survival — but it was my only
shot at a cure. Although the transplant carried many risks and unknowns,
the procedure itself was swift and anticlimactic. On what doctors call
“Day Zero,” Adam’s stem cells dripped into my veins from a hanging I.V.
bag, and it was all over in minutes. The hardest part came in the days
and weeks after as I waited for his cells to engraft in my bone marrow.
The goal was to reach Day 100 or “Examination Day” as doctors call it,
the first major benchmark for evaluating a patient’s recovery from the
transplant.
I lived to celebrate
Day 100, and then another hundred days after that, and many more.
Against all odds, four years after my diagnosis, I am still here:
battered, bruised, somewhat broken but in remission. It’s been just over
a year since I finished my cancer treatment and left the kingdom of the
sick. I am deeply grateful to be alive, but the task of finding my way
back to the kingdom of the well has been more daunting than I could ever
have predicted.
Survivorship comes
with unspoken pressures, responsibilities and challenges. After all,
what is the point of saving a life if the life isn’t a meaningful one? I
find myself pulled in opposite directions as I attempt to process the
trauma of these past few years while also taking steps to rebuild my
life. I joke that I am stuck in the Michael Jackson phase of healing.
I’m moonwalking: simultaneously gliding forward and backward but not
really going anywhere.
As I find my way
forward, I’ve hatched a new 100 Day Project. I am embarking on a 100 day
road trip across the United States. With a second chance at life, I
want to take some time off to seize my born-again freedom and to heal. I
have never been on a road trip and after spending so many years relying
entirely on caregivers, I’m fixated on the idea of getting in the
driver’s seat of my life.
Along the way I will
visit and thank some of the unexpected strangers who supported and
inspired me when I was sick. There was a mother hooked on the pain
medications she was prescribed during her cancer treatment, a man who
lost his brother in the North Tower on 9/11, a fit and healthy
twenty-something living in San Francisco who was searching for —
everything. I heard from doctors who assigned my columns as reading to
their medical students, and from students who were inspired by my
writing to become doctors. I even heard from a convict on death row in
Texas who wrote to me about the unexpected parallels between our lives.
“The threat of death lurks in both of our shadows,” he wrote to me in
careful cursive.
They don’t know it,
but many of these individuals became lifelines — bright, shining lights
during the darkest days. These strangers were more thoughtful, honest
and vulnerable with me and each other than a lot of the people I know in
the real world. Their empathy was an affirmation of humanity. Their
stories of resilience gave me strength in my moments of weakness. They
taught me about the kind of person I wanted to become. (First and
foremost, one who reaches out in times of hardship.) Most importantly,
they showed me that we all have interruptions at some point, whether
it’s illness, the death of a loved one, unemployment or a bad break up.
But as much as these
strangers affected my life, the truth is that I rarely responded to
them. Most of the time, I was just too sick and worn down by my illness
to have much of anything to give at the end of the day. Now, I’m taking
the time to respond to some of the people who wrote to me when I was I
was sick — not online or by snail mail, but in person. I want to know
more about their stories. I want to know what happens when the fourth
wall of the web is broken, when the shiny screen that protects us from
actual human interaction is lifted. And more than anything, I want to
say thank you. I suspect there is a lot I can learn from them as I try
to pick up the pieces of my own life.
Over the last few
months, I’ve taken driver’s ed, passed my road test, left my apartment
and outfitted a car into a camper. On Monday, I hit the road with my
badly behaved rescue mutt Oscar as co-pilot. I don’t have any
dramatically life-altering expectations from these nomadic months ahead.
As they say, you bring your problems and accomplishments with you, even
if you change your zip code. But I believe in the power of travel and
taking stock of what’s good in your life to break the chain of routine,
to uncrinkle the mind and to grow the spirit.
I’m not big on
numerology, but I like the idea of this road trip as an opportunity to
hit reset and to start afresh on a different kind of Day Zero. It’s my
way of reclaiming a number that, over the course of the past few years,
has come to represent seizing the unexpected. The difference is that
this time, the circumstances are of my choosing. It’s a journey into the
wilderness of survivorship and America’s interstates.
I’m at a crossroads.
To pretend that I’m not is to remain stuck, to proceed is to pick a
direction. I have chosen the latter. Oscar and I might end up in a
college dorm room in South Carolina, on a farm in the golden cornfields
of Iowa, on a couch in Wyoming, visiting a prison in Texas, and a
houseboat in Louisiana. We will go where the interruptions take us, and
see what we find.
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